Just joined with intention to learn from others suffering from PMR. Just diagnosed and on 20mg Steroids and wondering what all the fuss is about or am a fraud! From crawling around on the floor I hnow have no obvious pain or mobility problems.
Cheers Jim
I am so glad the steroids have worked so well. It really is magic. Just don't forget to take the steroids. That is when you remember how bad the pain was!!
Thanks for your comment.....I understand I will have to reduce my doses of Pred..........when should I start? Any advice would be helpful.
Cheers Jim
Your doctor should be the one to give you advice - only if the advice is poor, and it sometimes is, should our comments override his/her directions. I started at 15. One week successful trial. Told to stay at that dose for a further four weeks then begin reducing by 1 mg per week. (Many people are told to have bigger initial reductions, say 2.5, but on the forums we are advised never to reduce by more than 10% at a time. From 20 that would only be 2 mg.) Also told if pain started to return to stop reducing. Was not told to increase dose back to where I felt well. That I learned from Patient forum. So at 9 I went back up to 10. Then I took a copy of the dead slow nearly stop plan to my doctor and asked if she thought I could follow it. She said it looked fine. So that's what I have done. It basically had me reducing 1 mg slowly over a month. At lower doses it gets even slower and latest reduction was only .5 mg and had to be attempted twice, took three months to accomplish! (Now at 2.5, 18 months since starting pred.)
What you will learn from this forum is a) everyone is different and we even use the dead slow taper plan with variations to suit ourselves and b) most doctors encourage too rapid a reduction which leads to flares, and as PMRpro our resident guru says, "It isn't slow if it works".
Hello HeronNS.....this is so very helpful......exactly the kind of advice I was seeking. I have a blood test booked for 19th Jan and an appointment with my Doc a week later so I hope we can have a fruitful discussion and devise a plan for dose of Pred. for a couple of months at least into 2017.
I do walk a couple of miles every day as we have an active, but wonderful wee Border Terrier and really want to keep that going as it is so rewarding. I am also aware of the diet / weight considerations so am looking closely at my diet and hope with sensible use of organic veg. (my wife has an allotment) plenty of home-made soups etc.......I can keep active and reasonably fit?
Christmas past now, so A' the Best to all on this site for 2017! Keep up your good work.
Cheers Jim (newbie)
No, not a fraud at all, just someone who is lucky enough to become pain-free on the steroids - some aren't quite as lucky.
The important thing now is to remain on the starting dose for a good 4 weeks before even thinking about embarking on any reduction, and if you are someone who had raised blood test markers of inflammation at diagnosis, it would be a good idea to have the tests (ESR and CRP) repeated before any reduction to check that the markers are normalising. They can prove a useful guide, together with how you feel, as to timings of future reductions.
As to your reduction plan, it's very much a case of discovering what works for you. Some people can very successfully reduce in the first instance from 20mg to 17.5mg, whereas another person will find that they can only manage 1mg reductions. From a 40mg starting dose (I had PMR plus the linked condition, GCA, which requires a higher starting dose), I was initially very successfully able to reduce from 40mg to 30mg after just one week under the care of a wonderful rheumatologist. Just as well, as the initial high starting dose had me in A&E with a dizzy turn and my pulse all over the place. Luckily, my reductions continued successfully until I was way down into single figures before hitting a few problems with flares. The idea is to get you to the lowest dose that controls the inflammation, but unfortunately without a crystal ball none of us knows where that point will be, so better to take things very slowly but surely, especially in the early stages. We can also help ourselves by giving ourselves plenty of TLC and clearing the decks for a week or so particularly around the time of any proposed reduction to give our bodies the best chance to adjust to the new dose. If we overdo things on one day, PMR can come back to bite on the next.
Hope that helps but you already have luck on your side - many men seem to have an easier PMR ride than us females!
Love the cheeky look on that gorgeous little companion by your side!
I had a rheumie who diagnosed PMR and gave me 20mg of pred which was magic, then told me to reduce by 5mg after two weeks, my ESR was over 90 at the time. I did not know that this may not be a good idea and blindly listened to the guy. In hindsight I am not sure he knew much about PMR and just wanted me down to 10mg of steroids as quickly as possible. The recommendations by the others on this board are much more sensible. I hope you have a good doctor. Some of them seem to be living on the wrong planet.
Hi Jim,
I'm two years into PMR, and was/still am a relatively active 76 year old, dog walking and playing racquet ball etc.
Like you, I started at 20mg, and, after a brief increase to 30mg to get the pain under control, have now got to 6mg..
As to reductions, I think you have had excellent advice already from this forum. It took me about two months to get to 15mg, then a further 4 months to get to 10mg. After that, very nearly a year to get to 8mg. I guess, with this affliction, it is almost impossible to plan reductions all the way through. I think most of us have come to understand that PMR has a mind of its own, and lots of us have found sticking points when trying to reduce.
The only advice I can offer is to give yourself plenty of resting time. I fall asleep almost every day after lunch, which enables me to cope better with the rest of the day. If you do try to do too much, the PMR is likely to come back and bite you.
Anyway, take it easy, keep in touch with this forum, which is excellent, and, most of all, good luck.
Hi Jim,
Agree with others, and further to Charlie1boy's advice regarding rest would agree wholeheartedly. Although you now feel on top of the world, you mustn't think that everything is back to normal - it isn't. You still have the underlying condition, it only being controlled by the Pred - it's not cured, but can be controlled.
You need to keep up your exercise, but gentle walks, not route marches, and you need to rest afterwards. Both the PMR and Pred can have an effect on your muscles in that they don't recover as well as they should after exercise, and you need to bear that in mind. If you do too much one day, then sure as eggs are eggs, the PMR will fight back the next day!
As a rule most men find PMR less difficult than ladies, so hopefully you will as well, but please come back and ask any questions. The majority of us are not medically trained, but between us we know virtually everything about PMR and GCA - unfortunately!
Good luck.
Hi Jim,
I am also a newbie. Was diagnosed Dec 9th. I am 52 so there was a lot of denial going on because here in the states no one seems to have ever heard of PMR (except dr's). After almost crawling out of bed on Thanksgiving morning, I finally accepted something was wrong and succumbed to 15mgs of Prednisone. Within hours I felt better. You are very lucky not to have the flu-like feeling which for me was just aweful. I can't stress enough what everyone is saying about rest. I find if I do too much I pay for it the next day. I see my Rheumatologist on Jan 9 to discuss a taper plan. Thanks to these amazing people in this forum I will go to my appt armed with info because I understand and accept what has happened to me. Fabulous picture of you and your adorable pup. It's nice to see who we are speaking to 😊
~Marie
I started on 15mg and had the miracle in under 6 hours - but the rheumy had put me on a 6 week taper of 15/10/5mg, two weeks each. Within 6 hours of missing the first 5mg dose I was in the same amount of pain (maybe it felt worse after 6 weeks of none) as before. I never managed to reduce below 10mg without problems for the next 4 years and that is a common finding - allow a flare because of reckless reduction and it can be very difficult to get things under control again.
From 20mg it is a good step to go via 17.5mg to get to 15mg. The slow reduction mentioned is here:
healthunlocked.com/pmrgcauk...
It is being used in a clinical study in the north of England and the feedback thus far is that it is better than any reduction plant the patients have been asked to use before - and there are a lot of people on the forum who will agree I think. It may look slow - it isn't slow if it works! You don't have to start with the 1 day new/6 days old level, 1 day new/4 days old is workable for many people when using just 1mg reductions.
But don't be mislead - if you try to reduce too far or too fast or if you ignore the fact that the real disease process is still active in the background, pred is only managing the symptoms, and try to be superman you will soon find out what all the fuss is about!!!!!
Many doctors are terrified of steroids - and will try to force you to reduce at a rate that is not good for PMR! It's no fun to find it out for yourself!
Many thanks for the speedy replies and the excellent advice........so good to hear from you folks that have real experience of PMR and Pred.
Looking around the site I found what seems to be further excellent advice - The Dead Slow and Nearly Stop Reduction Plan. by PMR pro. This makes so much sense.
Cheers,
Jim
Hi Jim, I don't know if you have been prescribed vit D and calcium supplements? It is a good idea to take them if on steroids, as a side effect can be osteoporosis. Perhaps even ask for a vit D blood test. You should also get a Dexascan to check your bone density. When I had it I found that PMR was mentioned as a fast track appointment. Although it still took about six weeks to actually get the scan.
I know this will not be popular with everyone, but as is so often said 'not everyone is the same'. I took two years to go from 20mgs to 0mgs, 6 months off and then had to go back to 5mgs and am now reducing from that, but... providing I take the dose I can function completely normally. I have always had masses of energy and that has never dipped. Throughout my PMR journey I have dog-walked three or four miles a day, run my own very hectic and fairly physical business (seaside hotel) and still been able to party when I want to (which is quite often!). So, whilst I undertand everyone's caution, I do think you have to do what feels right for you. Good luck and I hope that you continue to be one of the lucky ones!
Hi Jim,
Not a lot to add thanks to all the excellent advice but would like to emphasize the need for caution with the exercise business. I fell into the trap of being too "gung ho" once I became pain free (back to the Gym, lots of digging, hedge trimming etc etc) and have reaped the reward of 2 torn right shoulder tendons = "Massive Rotor Cuff Tears". This might be bad luck but the surgeon thinks that prednisolone has probably played a part. He tells me he is reluctant to operate as, in his opinion, my tendons are so flimsy that stitching them won't do any good. Best of luck!
My Initial experience was similar so I thought I'd add my experience to the others. While I had a delay in getting a diagnosis, I am lucky the my blood work follows my symptoms, which makes dealing with my doctor easier. I had immediate relief on prednisone - felt on top of the world and went on with my daily life. However, I was brought up short with tapering my medication. My first rhuemetologist was one who was on a race to 0. (And didn't listen to me). New doctor and new tapering schedule has brought back some of the feeling of being healthy but I now have more respect for listening to my body and learning to pace myself. I also now understand that stress can set me back on my heels. I do ok for a bit and then have a (small) setback, get back on my feet, repeat. I am reducing in smaller steps and on a weekend with nothing planned. I have found some issues with exercise - I am much more prone to injury. Solution at this point is to exercise in a warm therapy pool. I also walk 2 miles several times per week, the number of days shift and change based on other demands on me. Good luck to you on your journey . I hope it continues to go smoothly.
Just thought I should give you an update since my introduction to this site now just over a month ago. I saw yet another doctor at my local practice on the 18th January as a follow-up to having bloods taken the previous week. I had reduced from 20mg of Pred to 15mg of my own accord and thought I may receive some praise for this initiative. Instead I was told to 'get off Pred' as soon as possible as it is not a good drug and particularly that I had been recently diagnosed with diabetes. I showed the lady the slow reduction method encouraged by all on this site and she more or less dismissed me. I can only assume she thought I had things under control and perhaps she had more needy patients waiting to be seen.
Anyway, I have now reduced to 12.5mg and only this week started on 12mg but some pain has returned particularly on waking until about lunchtime, mainly around the shoulders my right to be specific. I have general body grumblings and stiffness which I put down to be 'getting on'.
I am continuing taking the wee dug out every day and cover a couple of miles of steady walking. Watching my diet too and keeping the carb count low as I do not want to gain weight. I have also taken the sound advice from this site to rest and slow down, something I am having to learn.
I read in Kate Gilbert's book that she took up mindfulness meditation, and I took a notion to find out more about it. I can say that since starting to meditate every morning for about 15 - 20 mins I have found it does help to reduce stress and anxiety. I would recommend it as a way of helping to be calm and relax thereby reducing tension. I am still learning how to cope with this condition, and I am very grateful to you all for your sound and realistic advice and wish you all the best. Cheers Jim
Did pain start as soon as you made the most recent reduction? If so, it's possible it's steroid withdrawal. If you find it doesn't ease in a few days, or seems to get worse, it means you've gone past your current lowest possible dose and need to go back to where you last felt well (12.5?). Sometimes a slightly higher dose is needed if a flare is really getting underway. Don't leave it too long to go back up if you notice the pain increasing at all. Better to take each step very slowly so you are more likely to achieve success. If you do not have any problems getting your prescription refilled (some people have doctors who actually don't prescribe enough pred for them to be able to taper slowly enough) then you should be able to handle your own reduction and basically ignore pressure from the doctor to speed things up. You should indeed have been praised and encouraged that you had successfully reduced 5 mg in such short order! But the unanimous chorus from here is now going to be - slow down!
Thank you HerronNS this is helpful, I did not consider steroid withdrawal as a possibility. Yes, I take the point of going slowly and will do. So far I have been able to collect my full prescription and I have no reason as yet to expect otherwise.......and slow down I will.
Jim
The possibility of steroid withdrawal pain is one reason the dead slow method is so helpful as it gives us a chance to differentiate between steroid withdrawal and PMR. The body has a chance to adjust to the new lower dose over a period of weeks, and initial steroid withdrawal "niggles" disappear with that adjustment, but if pain begins to resurface later in the taper the chances are high that it's PMR and the taper should be stalled for a while. Cheers!
This is now making much more sense........and I am beginning to get my head around the various reactions to doses....extremely helpful...... such a fund of knowledge and experience.
Thank you again, cheers Jim
I was diagnosed on Dec 12. Took about ten days to accept the obvious diagnosis and start Prednisone, 15mg. By the time I started my ESR was 107 and CRP 6.8. After 2 weeks on 15 my Rheumy put me up to 20 for 3 weeks. I have been feeling fine. Some epigastric distress at first, but no other problems. I also started a no grain, no sugar, diet when I began the Prednisone and have actually lost weight at a surprising pace.
My tests are normal now, and have started to taper (17.5 2 weeks then 15mgs 2 weeks and more tests.) I do find that just dropping to 17.5 I ache in hands and wrists in the morning and a little in my right upper arm. My mobility is fine in shoulders and hips, but my hands don't feel fully flexible for a while. I'm 10 days into the taper now and wondering if I should contact my rheumy about this.
Today I decided to do my Qigong exercises/ stretches despite feeling a little symptomatic. Right now, after about 40min of stretches I am actually feeling better, not worse. We shall see what tomorrow brings I suppose.
My question: What are the best exercises for PMR/Pred. What is generally recommended? The Qigong has worked very well for me over the last few years for other joint problems. However, since the PMR, I've not been as consistent. Waiting to feel better makes no sense since this is a long haul condition. Walking is probably not a good choice for me as I have a toe problem that limits the speed and distance I can go.
Does anyone have a youtube that has been useful or a DVD I might buy and work with? The Qigong DVD I use was recommended at a class I attended. I just do the opening exercises, about 40 min. Don't think I have the coordination for the real routines. It also has massage and meditation. tinyurl.com/zfncdqc if anyone is interested.
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